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Knowing My Options

I've come to a point in my life where I find myself at a crossroad. I’ve been struggling the last five and a half years living with paralysis. It’s impossible to truly express the emotional rollercoaster ride that I’ve been on, since June 2005. I’ve tried my best to be open, about my thoughts and feelings. I’ve tried very hard to convey the magnitude of loss that I sustained, due to my injury, as well as the hardships of living with paralysis on a daily basis. Despite my best efforts, I feel like the average person can never understand how much I’ve suffered and continue to suffer. Words alone, aren’t enough to garnish empathy; sympathy perhaps. Even the people closest to me, that witness all that I have to endure, can never know what it’s like to live in my shoes. Although I often seek advice from other people living with paralysis, the pool of people that have/are lived/living through what I have/am, is very small. There aren’t many women in their early thirties with high level, complete spinal cord injuries. Even those that are out there, everyone’s life before their injury and at the point of injury differ. It’s near impossible to find other women that were injured in their mid twenties, that also lost careers, relationships, and everything else in between. While I appreciate the input and advice I’ve been given by injured men, I feel a huge disconnect and feel very isolated and lonely. The few women I have met, that I do consider able to understand me, are mostly all struggling just as much as I am, to cope with the insane amount of loss and change that our injuries have left us with.
Paralysis is so unique a state of being, that many times the things I experience (sensations, or lack thereof) have no comparison to when I was on my feet. Unless you’ve lived through it, you have no idea what it’s like. Anything you imagine is pale in comparison to what it’s like to live with it. There is no way to simulate the lack of feeling, on such as scale as a high level spinal cord injury. I’m not just paralyzed, I’m imprisoned. I’m cut off from 85% of my body. I can only feel my head, neck, shoulders, some of my outer arm (only up to & not including) the elbow and half of my breasts (top half). It’s as if the rest of me no longer exists, in certain respects, like outside touch, or stimulation. Unfortunately, I do feel phantom pains, pressure and discomfort, that has no real rhyme or reason, and usually has no medical diagnosis, or solution. There is no way to fully grasp how it feels to lose all sense of independence and dignity overnight. My spinal cord injury stole my ability to be self sufficient in a matter of seconds, and I’ve been wrestling with how to cope with the void left behind, for almost six years. My injury has left me feeling constantly vulnerable, anxious, depressed, full of regret, lost, deprived and scared. While I’ve tried my best to remain positive, despite the bleak reality that a cure is most likely never going to be a reality for me, I feel justified in feeling the way that I do. I’ve made proactive steps ever since day one, to stay as positive and as mentally strong as possible, so that I could somehow keep moving forward, against my inner dissatisfaction of my life and the compromises I’m forced into making every day. I’ve sought counseling, gone to therapy, take an ever growing number of pills (anti-depressants, sleep aides and anti-anxiety meds), share with my peers, write, paint, prayer, meditation, distraction, etc. and feel like I’m running on vapors and running out of options. I’ve been pushing forward more so for my loved ones, than for myself, and find it increasingly harder to find reason, and/or motivation to essentially keep torturing myself.
It’s maddeningly frustrating to feel like I constantly have to justify for why I feel so down. I get so angry inside and just want to scream sometimes, “are you blind?!.” to those people who expect me to accept all that I’ve lost and just to keep moving on with a smile on my face. Most of the time I assume it’s ignorance that makes people have unrealistic expectations. Reality is, most people don’t have a clue what it’s like to be forced into (out of lack of choice) accepting help: to need another adult to bathe, feed, and dress you, to have no control over bodily functions, to need a bowel regime and catheter, to need another person’s help with intimate hygiene tasks, like mouth care, shaving and menstruation, to need help for the smallest and otherwise seemingly insignificant tasks like scratching and itch, or fixing a wrinkle in your clothing, almost total lack of privacy, to be devoid of sensations and cut off from almost all physical intimacy and near total deprivation of sexual pleasure. Is it right for people to expect me (and people in my similar situation) to keep living this way, knowing full well that no one would ever knowingly choose to live this way. I mean, when someone is newly injured there’s always the hope of a cure. Once an individual is medically stable, they’re pretty much stuck living with paralysis. Once reality really hits, and/or hope for a cure fades away, what choices are we left with? Do I really have a choice but to cope the best as I can? Is it right to impose such a harsh quality of life onto someone? At times, I wish I wouldn’t have had that initial hope; that I would’ve given up when death would’ve come easily. Instead, I fought (and continue) to live a compromised version of my old life. It just never seems to get any easier. In fact, coping has gotten progressively harder, and my hope for my old life has faded away. I’m nearly always sad and feel trapped, with few options.
Since my injury, I’ve thought long and hard about quality of life, and about death. I’ve had to. I’ve put my wishes down in my living will, and often wish I would’ve seriously considered what I deemed as quality, before my accident. If I had the living will I have now, at the time of my accident, I would’ve spared myself the last five and a half years of pain. After the trauma and sheer terror of my first year, post accident, I know for certain that I never want to live reliant on machines. I feel it’s bad enough to be completely reliant on people and medication, let alone needing a ventilator, or dialysis. I’ve been on a ventilator, completely paralyzed. It was a hell on earth that I never want to relive. As scary as death seems to me, it offers the hope of eternal life, or at the very least, an escape from the chronic sickness and emotional pain that I feel every day. Although, I have mixed feelings of sadness for my .loved ones and fear, for myself, I find myself contemplating my own mortality on a daily basis. What options do I have? It’s not so easy as just saying, “I give up.” If that were the case, I’m sure many people that are living with paralysis would not be here. At this point, my future seems bleak and it’s hard to be in the dark state that I’m currently in.
There are like I said earlier, people out there that do have a better understanding of my situation, and are somehow able to surpass all of obstacles of paralysis and find happiness. So then I begin to wonder if I’m just weak, for not being able to find joy, and for being so unhappy. Of the people that I know that are living with paralysis, I can’t help but wonder how it is that some of them have continued to try moving forward for decades. I don’t want to live into my forties, if it means I’m still living in a chair. However, I find “giving up” takes perhaps more courage than just scraping by. What are my realist options? I have the right to refuse nutrition, hydration, medications and treatments. What does that really mean? I feel like a lot of my initial strength to fight to live, came out of ignorance and denial of what my life would be like. I’m at a point where I feel like I’m on the verge of going crazy, and I don’t want to choose to die out of ignorance either. The process I’d have to endure, in order to die, might be so unbearable that I might be tempted into backing out, and fight to live again. It’s a horribly sad thought that I’ve thought about many times. Understandably, most people don’t want to contemplate death, or indulge my suicidal tendencies, by giving me straight answers. Then again, up until recently, I was not seeking out specific answers.
I feel as though I’m battling myself, in finding reasons to keep moving forward. In the late hours of the night, I think about my life and the choices I’ve made. I beat myself up over regrets and find myself pleading and begging God to be merciful. Every night, for a long while, I’ve asked God (if he/she exists) to either cure me, or take me. Obviously, I’ve yet to get a response. I can’t help but wrestle with myself over morals and ethics. I wonder if giving up on relying on others is the same as taking my own life. The superstitious (or perhaps faith) part of me wants to know if God would consider refusal of help suicide, and what that would mean for my soul (if I have one). No one can give me concrete answers to those questions. All I know is that it is illegal for my loved ones, or medical professionals to assist me. Therefore, I can’t ask for an injection, or a handful of pills (a quick, peaceful death), without putting that person at criminal liability and/or horrible guilt. I know that if it were legal here (like in Switzerland) I could find it in myself to ask for help, but since it isn’t, I can’t and don’t expect anyone to ruin their own life, for the sake of ending mine. Therefore, my only real options are to refuse the treatments, medication and/or food and water that are keeping me alive. I am curious to know the medical repercussions of such a decision would be and what I’d have to endure, if I chose to exercise my rights. What kind of death would it be, to starve myself of food and water? How long would it take? What would happen if I refused to continue my bowel regime and/or stopped taking my medication? Would those decisions cause a lot of physical pain? Would I qualify for palliative care, like hospice? Would I be entitled to morphine, or something similar, to ease the pain and stress of hunger, impaction, and/or whatever discomforts that refusing those things would bring? What means would be the quickest, least painful way? I did ask my doctor some of these questions, but only got vague responses. I think that’s mostly because he wants me to keep on living, but also out of lack of knowledge. So I’m left wondering if I can find the answers, and if so where? Although part of me feels like a failure, or weak for considering death, I feel like I have the right to know the answers to these questions.
I hesitate to even post this, as I'm sure there are many people in this community that might not agree with, or condone this type of dialogue, or conversation. I’m just looking for answers. I don’t expect anyone to advocate the thought of giving up on life. I understand that there are many people that are fine with their lives, and living with paralysis. I also expect that most anyone who reads this will probably try and dissuade me from taking drastic measures and offer me I pep talk. I’m not even saying that I am giving up. I just want to know what my options are, at this point in my life. I realize that I’m at a very low point; that’s precisely why I’m seeking help. I don’t want to feel miserable, but I am.

tskushi -- Don't give up; There is a God, and you do have a soul. None of us can answer the question of why or why not. Your story is heartbreaking, but leave that option to God. Can you not find peace in your art?

In a way, I feel like this lifestyle is not a natural life. I mean, if I literally left things up to God, I'd be dead a long time ago. It's only because our society has the means & resources to keep me alive, that I'm still here. Given the fact that I can't even feed myself, I'm only around through the intervention of others.
I've used my artwork as a means of expression & as a tool to educate ppl about paralysis, but honestly, I'm left feeling empty.

I will probably get shouted down for posting this, but I personally believe that a person has the right to explore all their options. There is an organization called Compassion and Choices. They do a number of things, including but not limited to, advocating on the part of those seeking assisted suicide for medical reasons. I am not posting this to say you should look them up...but they may be able to offer you assistance in answering some of your questions. Knowledge is power and maybe getting some answers to your questions can help you deal with some of the turmoil you are currently feeling.

This is an obvious question but have you sought professional help? I have struggled a lot with depression and many of the same emotions you express here. With a combination of medication and having somebody (a therapist) to talk to, I have been able to ride out some very low periods in the past few years. The problem hasn't magically disappeared by taking medication or talking about how I feel--I still struggle with periods of fairly deep depression. But seeking treatment (meds, talk therapy, etc) has helped me a great deal. It is never easy, it seems. But I find if I can get the clinical depression under control through medical means, I am better able to find the energy and desire to go out and do other things that can help bring some happiness into my life (visit my family, socialize with friends, attend classes). When I cycle into depression, I tend to isolate myself, which reinforces my feelings of hopelessness, helplessness, and loneliness. My physical pain also seems to sky rocket during this time too, which I think is because I become unable to use my normal coping devices and become fixated on it. It's a vicious cycle.

tskushi, I do know how you feel. I'm not into suicide, but have had many the time I would'nt have argued had He been willing to take me home. We loose so much.........no stone is left unturned! We have almost no privacy left......be it our thoughts. And they can become an enemy if they stay on the dark side. I find this time of the year, mine tend to lean towards the dark side...... Isolation is a big enemy. And yet, the more I'm alone, the less I care to have company.

It's hard to get past what you've lost and find a new purpose, but that's exactly what you have to do. I'm past the age of wanting to take classes. I stink at art. Lord knows no one wants to read what I write......there's nothing left but the few friends I have. Most of my friends are right here on CC, or I met them here.

Harder for me than the paralysis, is the central pain, neuropathy.........what an ugly, nasty, evil thing. It takes away so much more than the physical abilities. It takes away your mind......memory problems, concentration, and moods. Then there is the medication to deal with.........

I don't know what the answer is for you. We all have to reach inside ourselves and try to figure out someway to go on. For you maybe it's in your art. Maybe you should go back to school? Maybe you could volunteer and help others with sci.....I just don't know.....

Everything you said I been, being and go through as well. I was paralyzed 23 years ago, no cure was ever an option, no awareness about this life, never heard of stem cell.

My options was this is it ,paralyzed for life, so therefore I had to acept and pray. I give all my shield of strength to faith in God, I believe He is there but He must also let things happen.

Able people who commit suicide have ability to use their hands, people like us who can't self kill usually emotionally heal enough to not want to kill ourselves so sometimes having abilities is worse then not.

I use to try and think of if what I did in life was the reason, so I made a list of things I did. But when I started watching the news and I see people out there murdering women and children, I threw my list away. If a murderer of children can walk then why would God paralyzed me because I had sex with a few girls, I didn't force no one. My list didnn't consit of people I physically hurt so what we do has no concrete reason for being paralyzed or Osoma Biladen been disabled a million times over.

We who are paralyzed was never offered an instruction manual, unlike a car, when I fuses blow, there's no answer to how do we replace it and fix our emotions, we learn every day on our own

So after saying all that, I want you to know I'm here for you in our own way of needing that army of support and struggle in this war on acepting paralysis. You've very talented and pursue more then most able, took me more then 5 years to find myself, don't give up.

I am grateful that others with higher level injuries have answered your post. I am a lower level and don't feel that I have the right to even respond to some of the things you are feeling. However, as a human being suffering from Central pain syndrome, I know how maddening it gets. I know what its like not want to go on and to be at that low point.

I also know the "wrestling" going on in your head regarding the rightness of "ending it all" and what would God think and what would the family think. I am a believer too but I am tolerant that others here at Carecure are not.

It is not about advocating for life..its about being able to live in your body and no one knows that except you.

I pray you find your answers and a peace (that surpasses all understanding) that works for you. Just know you are not alone....

orangejello- I've been on anti-depressants since my accident (6/5/05). I was taking Efexor for a long time, and tried several sleep aides during my first year post injury (I lived in a facility at the time). This past year I switched to Pristiq, because I no longer felt like the Efexor was doing anything. I've since added Xanax & Remeron, at night. I also see a therapist monthly. I've been doing talk therapy on & off, since my accident. Initially with a psychologist, then psychiatrist, and now a counselor. I seem to keep adding more things & seeing less results. The truth is, that my mental state, is directly related to my physical state. So, unless I'm cured of paralysis, there's no words or pills that will really make me feel better. They can at times make my situation tolerable, but I've yet to find acceptance or peace with my life. I'm always left feeling frustrated & empty.

smokey-As far as my art goes, I already have a degree (B.A. Fine Art). I did start taking courses towards my Masters in painting, when I was still on my feet. I've thought about continuing with it, but honestly I don't think it's a realitic goal. I doubt I'd be able to tolerate the commute, on top of a six hour studio session, every week. I don't think I'd be able to keep up with the workload. Not to mention, the hassle of coordinating help & transportation. Plus, there's the fact that I'm frequently sick and have to worry about the unpredictability of incontinence issues. The other thing is, I truly, truly loved my career. I wanted to teach art (K-12) since I was in the 6th grade. I worked hard in college & landed a job in my dream position. I taught art grades 1-5, in an upper middleclass town, with strong support for the arts. It just doesn't get any better. Although I can still obviously write lessons, it's all the physical "doing" that I loved most. Paralysis prevents me from doing all of the aspects I loved the most about my career. Practically speaking, the district denied my request to return anyway. They said they couldn't afford to hire a teacher's aide, and let's face it, any public school district is going to look at me as a double salary. I need someone to be my hands for me. There's no way around that. I really don't have a desire to prosue anything else. The artwork I do for the AMFPA is mostly still lives, and has no feeling behind it. I just do it for their support & vice versa. Plus, it helps me build on technical skills. I've used my personal art as a tool for advocacy. It has given me a certain amount of purpose, but in the end I'm left feeling pretty empty. I feel like I'm always going through the motions for others, more so than for myself.

rich- I'm amazed and saddened by how long you've managed to keep pushing forward. I wish I had your strong faith in God. I certainly hear you, about the unfairness of it all. Before my accident, I was a hardworking, law abiding citizen. I was happily employed as an art teacher (my dream job). I busted my butt in college & graduated with a 3.9 GPA. I've always been kind & generous. My worst crime was a speeding ticket (when I first started driving). I was well liked, had a great life, tons of friends. I helped my family. Yet, here I am, suffering for one stupid, split second mistake, while some rapists, pedophiles & murders live their entire lives totally healthy. It doesn't make sense. I get the whole free will thing, and I don't blame God for my mistake. It's just hard understanding why it seems like God interceeds and helps create miracles for some people, and not for others. I struggle tremendously with my faith in God, never the less, any particular religion.